Hi!
I'm new to the group. I was told I have L MC. After having a colonoscopy. For a yr and a half I've been having tests. Honestly I'm just relieved to know what's going on. So I'm trying to wade through all the information.
I was diagnosed with MS 18 yrs ago. My neurologist told me that only about 15 to 20 percent of MS patients have another autoimmune disease. I'm curious if any of you do.
Also it drives me crazy that others are bothered by what I do and don't eat. What is the big deal. So in addition to figuring out how to manage MC I get to hear everyone's input. Ugggggh.
Oh also I'm having thyroid issues. It's like my body is completely turning against me!!
I'm so glad to find this group.
Kristine
Another autoimmune disease?
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Another autoimmune disease?
~Kristine
Hi Kristine,
Welcome to our internet family. We consider ourselves a family because no one truly understands this disease unless they actually have it. It tends to be much more debilitating than most doctors (and everyone else) realize.
How Many of Us Have Other Autoimmune Issues?
My guess is that your neurologist made a wild guess, rather than to actually look up the statistics. Or maybe he or she doesn't understand autoimmune diseases. We have a number of members here who also have MS.
And as you can see from the results of this poll, we are approximately 7 times as likely as someone in the general population to have thyroid problems:
Poll About Thyroid Issues
I'm sorry that you needed to find us, but I'm glad that you did. Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
Welcome to our internet family. We consider ourselves a family because no one truly understands this disease unless they actually have it. It tends to be much more debilitating than most doctors (and everyone else) realize.
I find that very hard to believe. Most autoimmune diseases tend to attract additional autoimmune diseases. For example, you might be interested in the results of a survey we did a few years ago. As you can see by the results of the poll, less than 20 % of us have less than 2 autoimmune diseases, and over half of us have 3 or more:Kristine wrote:My neurologist told me that only about 15 to 20 percent of MS patients have another autoimmune disease.
How Many of Us Have Other Autoimmune Issues?
My guess is that your neurologist made a wild guess, rather than to actually look up the statistics. Or maybe he or she doesn't understand autoimmune diseases. We have a number of members here who also have MS.
You are definitely part of this family, because we all have had way too much experience dealing with that same problem.Kristine wrote:Also it drives me crazy that others are bothered by what I do and don't eat. What is the big deal.
And as you can see from the results of this poll, we are approximately 7 times as likely as someone in the general population to have thyroid problems:
Poll About Thyroid Issues
I'm sorry that you needed to find us, but I'm glad that you did. Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Another autoimmune disease
Thanks Tex,
I'm glad to know that there's a place where my questions can be answered.
I'll browse through the site for topics of interest.
I'm glad to know that there's a place where my questions can be answered.
I'll browse through the site for topics of interest.
~Kristine
I was diagnosed with psoriasis in 1973, and have had my body 2/3 covered with plaque.
In 2010 I was diagnosed with collagenous colitis. I received no information regarding the illness, only a bottle with Entocort and a slap on my shoulder. "You are lucky it is not cancer...", they said. I was so ill, I only wanted to die. Nausea, brain fog, unsteady gait, no appetite, anxiety etc. and I lost 12 kilos in one year.
Finally, I got in touch with some functional medicine doctors in 2013, and the first thing they told med was to quit all gluten- and dairy products. Just 4 weeks after this, all my psoriasis had disappeared.
But, my health was a mess. Then in May 2014, the D came back. In despair, I searched around on the internet and some people mentioned B12. Lack of B12 can cause D.
In Norway you cannot buy B12 tablets so I ordered some from Denmark. Well, long story short: The D stopped promptly, I walk steadily, I got my good old humour back, I sleep like a princess and my appetite is back :-)
In 2010 I was diagnosed with collagenous colitis. I received no information regarding the illness, only a bottle with Entocort and a slap on my shoulder. "You are lucky it is not cancer...", they said. I was so ill, I only wanted to die. Nausea, brain fog, unsteady gait, no appetite, anxiety etc. and I lost 12 kilos in one year.
Finally, I got in touch with some functional medicine doctors in 2013, and the first thing they told med was to quit all gluten- and dairy products. Just 4 weeks after this, all my psoriasis had disappeared.
But, my health was a mess. Then in May 2014, the D came back. In despair, I searched around on the internet and some people mentioned B12. Lack of B12 can cause D.
In Norway you cannot buy B12 tablets so I ordered some from Denmark. Well, long story short: The D stopped promptly, I walk steadily, I got my good old humour back, I sleep like a princess and my appetite is back :-)
Hi Lilja,
Welcome to our internet family. Yes, doctors over here also don't take the disease seriously, unfortunately. It's a shame that they can't "test-drive" the disease for a few weeks or so to see what it's really like.
The inflammation and diarrhea that is so common with CC causes malabsorption problems, and this eventually leads to certain vitamin and mineral deficiencies. Almost all of us become deficient in vitamin D and magnesium, and if the active reaction continues long enough, we become deficient in vitamin B-12 and sometimes other B vitamins.
You are fortunate to have been able to find knowledgeable doctors who knew how to treat the disease. Here in the States, doctors who understand how to treat MC are still very difficult to find.
Since you mentioned gait problems, I'll point out that 5 years ago a neurologist diagnosed me with Parkinson's disease, based on my gait problems and other neurological symptoms (such as peripheral neuropathy). I couldn't convince him that the symptoms were the result of permanent damage to my brain and central nervous system as a result of too many years of untreated gluten sensitivity.
Ever since that day, I've been taking a product called Metanx, which is a combination of the active forms of vitamins B-6, B-9, and B-12, and for several years now, my lower leg reflexes and sensory perception in my feet have been much improved, and are almost back to normal. And my gait is close enough to normal that I no longer meet the diagnostic criteria for Parkinson's disease. Some of us do much better if we take the active forms of those vitamins, because we have a genetic disorder that interferes with our body's ability to convert the inactive forms into the active form so that our body can use it. But although I've seen several neurologists since then, none of them would believe me when I told them that my symptoms were due to damage done by gluten sensitivity. Neurologists in this country at least, are still living in the dark ages when it comes to gluten sensitivity and the problems that it can cause.
It's great to hear that you're doing so well now. Again, welcome aboard, and thank you for sharing your experiences with treating CC.
Tex
Welcome to our internet family. Yes, doctors over here also don't take the disease seriously, unfortunately. It's a shame that they can't "test-drive" the disease for a few weeks or so to see what it's really like.
The inflammation and diarrhea that is so common with CC causes malabsorption problems, and this eventually leads to certain vitamin and mineral deficiencies. Almost all of us become deficient in vitamin D and magnesium, and if the active reaction continues long enough, we become deficient in vitamin B-12 and sometimes other B vitamins.
You are fortunate to have been able to find knowledgeable doctors who knew how to treat the disease. Here in the States, doctors who understand how to treat MC are still very difficult to find.
Since you mentioned gait problems, I'll point out that 5 years ago a neurologist diagnosed me with Parkinson's disease, based on my gait problems and other neurological symptoms (such as peripheral neuropathy). I couldn't convince him that the symptoms were the result of permanent damage to my brain and central nervous system as a result of too many years of untreated gluten sensitivity.
Ever since that day, I've been taking a product called Metanx, which is a combination of the active forms of vitamins B-6, B-9, and B-12, and for several years now, my lower leg reflexes and sensory perception in my feet have been much improved, and are almost back to normal. And my gait is close enough to normal that I no longer meet the diagnostic criteria for Parkinson's disease. Some of us do much better if we take the active forms of those vitamins, because we have a genetic disorder that interferes with our body's ability to convert the inactive forms into the active form so that our body can use it. But although I've seen several neurologists since then, none of them would believe me when I told them that my symptoms were due to damage done by gluten sensitivity. Neurologists in this country at least, are still living in the dark ages when it comes to gluten sensitivity and the problems that it can cause.
It's great to hear that you're doing so well now. Again, welcome aboard, and thank you for sharing your experiences with treating CC.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Kristine and LiljaKristine, please do a Potty People search for Low Dose Naltrexone and/or LDN. If you are on Facebook and want to join our secret Potty People LDN group, send me a private message here. LDN has been very successful in treating MS. Also, a great source of testimonials is You Tube.
Lilja, I will up my B-12.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan